Five years ago today I was pregnant with my first child. I was 18 weeks along and scheduled for the big ultrasound. Mark and I decided that it should just be the two of us that went that day (our families lived 8 hours away from us) and we wanted to be able to just celebrate and shop after we found out the baby's gender. Isn't that what every first time parent does?
Mark and I both took the day off from work and I made sure I got the earliest appointment I could. We were so excited. I had felt for weeks that I was going to have a girl (a gender that is in short supply on Mark's side of the family). I was even stressed that my mommy instinct was off and that they were actually going to find that the baby was a boy. Yes, with all the things that can and do go wrong in pregnancy, that was my biggest worry. And honestly, most parents only worry about that. We all say we want a healthy baby first, but most of us are naive as to what that really means. And for good reason. The vast majority of babies born in the United States are healthy. Only a small percentage of parents have sick babies. So most of us never know the heartache and worry that comes with being a parent to a sick newborn. Thank heavens!
I have always surrounded myself with people who have had less than normal beginnings with their children. I know several people whose babies were NICU babies, either born very early or with bodies that needed a little help from modern medicine. A family friend of mine had 2 children with clubbed feet (which increased her risk of having children with spina bifida). I even knew people who said goodbye to their babies at or shortly after birth. Still, until you yourself go through something less than normal, you have no concept of what wishing for a healthy child is really like. Unfortunately, I have since learned my lesson.
|On the right side is the top of Isabel's head. You can see a circle|
with dots in the center. That is her brain. Without skull to cover and
protect the forming brain tissue, Isabel's brain was exposed and
and being damaged by my amniotic fluid.
On July 29, 2009, we were doing our mid-term ultrasound. The ultrasound tech doing the ultrasound was very kind and we liked her instantly. Looking back, I feel awful for her. First thing she had to have noticed was that our precious baby was sick. The first images of her head clearly reveal, if you know what you are looking at, that her head was not healthy. Mark and I, however, had no idea what to look for, and were oblivious to the whole thing. The tech confirmed that she was, in fact, an Isabel and we cried in our excitement. FINALLY! A girl in the Gabica family. Our reactions to the ultrasound made the tech unable to tell us what was wrong with our daughter. She continued taking pictures of her head, and we had no idea that anything was wrong. How would we have known? This was the first time either of us had ever had an ultrasound like us. We did go on and on about how great having a girl will be, further making our tech unable to tell us what was wrong.
|Another clear view of Isabel's head. Again, the stuff above her|
eyes is exposed brain tissue.
Let me assure you, we do not, repeat, DO NOT hold any negative feelings for our ultrasound tech. I honestly do not think they should ever have to tell the parent that their child is sick. That is what the doctor, who is confirming the diagnosis, is for. I am truly thankful that for one whole hour, Mark and I were able to appreciate Isabel without having the knowledge that anything was wrong. It would be the last hour of normalcy we would ever have as expecting parents.
Our first clue something was wrong happened as she finished our ultrasound. She said she had to go check something and left us to clean myself up. She came back and said that my doctor would like to see us. Odd. We walked across the hall of the hospital to his practice and was immediately lead back to an exam room. Mark and I were starting to worry at this point. What was this about? I have never heard of this happening to anyone I knew. Finally, Dr. G came in, fresh from surgery, to inform us that our baby had something called Anencephaly, which meant she had no skull. I broke down crying. A baby with a physical disability? How would I ever deal with that? He went on to say that babies with this condition could live if they are fed. I had no idea what he meant by that. Of course we would feed our baby! Never, in any of the discussion about what was wrong did our doctor tell us this was a fatal birth defect. Ever. We left his office picturing our lives that would now be centered around helmets and wheelchairs. Not the reality that we would be planning a funeral and making end-of-life decisions. I really am disappointed and disgusted that our doctor didn't confirm that we knew what Anencephaly meant.
We came home to call our families with the news. More crying. Lots and lots of crying. After we couldn't deal with telling one more person, we crumbled on the couch. Mark son jumped up exclaiming we had to get out of there. Now. We were running away to Vegas. Within a short couple of minutes Mark had booked us a room at the Luxor and we were packed and leaving the the hell-hole that was our lives. We arrived in Vegas a couple of hours later, shocked about our lives and needing some comfort. We spent most of the night in our room crying. After crying out every tear our bodies had, we ventured out to walk the Strip.
In case you didn't know, I love Las Vegas. You can be anyone you want on the Strip and no one will notice anything wrong. So that is what we did. We were no longer parents to a sick baby. We were parents who were happy to learn we were having a girl. Strangers, not knowing our situation, congratulated us on our new baby. For one last night, we were pregnant with a healthy girl. It was exactly what we needed. We retired for the night a little after midnight, having spent way too much time watching the water fountains at the Bellagio. Honestly, a couple of water shows can fix any sour mood I am in.
Morning came and the realization that we would have a child with disabilities woke me. I cried in the bathroom for a long while before Mark awoke to join me. How would we ever do this? How did this happen? We had to know more. We came home, broken and in need of answers.
Mark was the first one to Google Anencephaly. Bad idea. The first website, Wikipedia, had truly disturbing pictures of babies with Anencephaly. And, incidentally, that is also the website that informed us of what we were actually facing. Our introduction into Anencephaly was the first paragraph of the entry on Wikipedia:
Anencephaly is the absence of a major portion of the brain, skull, and scalp that occurs during embryonic development. It is a cephalic disorder that results from a neural tube defect that occurs when the rostral (head) end of the neural tube fails to close, usually between the 23rd and 26th days of conception. Strictly speaking, the translation of the Greek term to English is "no brain" (that is, totally lacking), but it is accepted that children with this disorder are born without a telencephalon, the largest part of the brain consisting mainly of the cerebralhemispheres, including the neocortex, which is responsible for cognition. The remaining brain tissue is often exposed, i.e. not covered by bone or skin. With very few exceptions, most babies with this disorder do not survive.
Wait. "With very few exceptions, most babies with this disorder do not survive." What does that mean? More internet research turned up that most doctors push for termination of the pregnancy because 100% of babies with Anencephaly will die. A quarter of them won't survive birth. Most die in the first hours after birth. A few make it days or even weeks. Rare is the story of a baby with Anencephaly surviving more than that. Very very rare. Why didn't our doctor tell us this? Why were we finding this information out on the internet. Again, we went to bed crying. We knew, no matter what we did, we would bury our sweet Isabel.
More internet research armed us with the information we needed to meet with the specialist in St. George. He confirmed Isabel's diagnoses and pushed for a termination. He told us we were stupid and terrible people for going on with the pregnancy. She will be in constant pain, if she can feel anything. We were just delaying the inevitable. And, I was putting my life at risk. There was a myriad of things that could go wrong and I could die. I knew what he was saying was a possibility, but I also knew with every fiber of my being that this was what I needed to do.
|Isabel's 32 week ultrasound. The only picture I really have of|
her alive. I cherish this picture.
If Isabel's life taught me anything, it taught me this, never judge how someone handles these decisions. Whether the parents carry to term or terminate, they are still losing a child. They are still going to have the same risk to have another one with neural tube defects. They are still mourning what could have been their whole lives. There is no pro-life or pro-choice discussion in this situation. There is only loss and grief and sadness. Never judge a mother making the either choice. They are just a parent doing what they either know or are told is best. We all have the same outcome. We all are losing a precious person from our lives. One we will never really know.
I carried to term. Because I did develop complications, we chose to induce at 38 weeks and Isabel was stillborn on December 22. We never met her. The end of her life came when she got stuck because of her large body size. Maybe if I had induced earlier, I could have gotten her out alive? I live with my decisions every day. I don't know if the choices we made were the "right" ones or the "wrong" ones. I only know that I miss her. I know that she changed the way I view life. She changed how I feel about having more kids. It scares the crap out of me. Luckily, her sister came just 13 months later, before the numb of Isabel's death wore off. I still question wanting another one. And this day, five years after the day that my life forever changed, I still can make myself sick with worry that if we were to have another baby, we would have another with a neural tube defect. There is no real way to be assured that it won't happen again.
I have changed as a person since that day. I have found a way to appreciate my body and not blame it for Isabel's death. Running has helped a lot. I have had some seriously spiritual experiences while running. Something about being tired and hangry (hungry and angry= hangry) and still miles from the car open me up to some of the best experiences I have ever had. I have ran crying, begging for forgiveness from Isabel and was met with peace and felt so surrounded with love. I have had extra bursts of energy when I though there was nothing left to give for miles. I have had the right person find me at my lowest point (usually Joshua) and been dragged to the finish. All of these gifts have made me stronger and closer Isabel and who I want to be. And it all started, five years ago today.